Tuesday, August 16, 2011

The Horrible and The Miserable

In his 1977 Academy Award-winning cinematic masterpiece Annie Hall, Woody Allen explains his belief that the entire population can be broken down into two groups, the horrible and the miserable:

Yes, the horrible are "terminal cases, blind people, the crippled…", and the miserable are everybody else, Woody advises Annie, so you should be happy to be miserable.

When I first saw Annie Hall, decades before I was fated to join the ranks of the horrible, Woody's analysis of the human condition seemed perfectly on target, so much so that I wanted to scream "Yes!" at the screen when I first heard this philosophy so succinctly put to words. Annie Hall is a bittersweet comedy, though of the most illuminating sort, and Woody's words were meant to be sardonic, but the teenage me found them to be in perfect sync with my own observations about our society and the world at large. It did seem to me, as Henry David Thoreau wrote, that "most men lead lives of quiet desperation, and go to the grave with the song still in them."

Yes, it's safe to say that I wasn't the most happy-go-lucky young man, and the divide between the miserable and the horrible fit well with my cynical and angst ridden personal philosophy. Not that I was a sad sack, mind you, as I was always equipped with a keen sense of the absurd and thus a lively sense of humor, but looking around me I saw a world filled with adults who to my eyes had long ago forsaken what they wanted to do for what they had to do, and who were so anesthetized by the repetitious machinations of society that this tremendous sacrifice barely even registered with them.

So, by Woody's definition, I would just have to be content with being one of the miserable. The thought of somehow one day becoming one of the horrible was, well, just too horrible to contemplate. The idea of having to deal with severe physical infirmity on top of the emotional grind of everyday life would be simply unendurable. Yet, now that I find myself firmly in the ranks of the horrible, I'm less miserable than when I was one of the miserable. How strange, and how completely unexpected.

Back when I was lucky enough to be one of the miserable, I did a pretty good job at embodying that designation. During the first decade or so of my adult existence, my determination to not succumb to the drudgery of 9-to-5 led me to live a rather Bohemian existence. I spent several years as the lead singer of a punk rock band, working part-time jobs to earn just enough cash to keep a roof over my head and a belly at least half full of food (the other half taken up, more often than not, by vodka and beer). I cultivated the uncanny ability to be able to identify the one female in a crowded room who would be most toxic to me and then fall madly in love with her, a surefire ticket to misery. Though I was living a life of relative freedom and the potential for having a grand old time abounded, my natural proclivity towards anxiety and depression kept me in a nearly constant state of emotional turmoil.

Soon enough, as I got older, responsibility started creeping in, and I was forced to emerge from the nocturnal underground and try my hand at making a living. Somewhere along the line I'd earned a degree in Broadcasting and Film, and an odd confluence of events found me living in Fort Lauderdale, a very accidental Floridian. I was a stranger in a strange land, and with few remaining options, I put my degree to use, finding work in the production studios of the local cable television company, a humble start to a nearly 20 year career in the TV and video production business.

Through a series of ever increasingly responsible jobs, I found some measure of professional success, but always harbored the gnawing feeling that I had somehow strayed very far from my path. My youthful dreams of living large as a rock star or writer slipped out of reach in my rearview mirror. Though I could soon enough afford to placate myself with fast cars and shiny objects, I felt an increasing sense of suffocation. I eventually wound up in a job that required me to wear a necktie (ack!), and I vividly remember the pit I felt in my stomach each morning as I stared into the mirror watching myself literally tying a noose around my neck.

Somewhere along the line I'd blindly capitulated and crossed that line between "want to do" and "have to do". Despite my quiet desperation, I couldn't see a way clear of my situation. Now there were bills to pay, a lifestyle to be maintained, femme fatales to be entertained. I was stuck in a prison of my own making, definitely one of the miserable, but still thankful to not be one of the horrible.

And then, one day, I was. I'd been back in my hometown of New York about four years, and was working in a high profile job that I actually didn't hate (and one for which I did not have to wear a necktie). Having finally learned my lesson, I married a wonderful woman, and settled into a very pleasant existence. Still, I harbored the unsettling feeling of somehow being false to myself, as if I'd been shoehorned into living someone else's life. During my walking commute to work, I'd constantly fantasize about a life spent writing, or taking photos, a life full of want to do's rather than have to do's.

One cold day in March 2003, while walking my beloved pooch Stella, I realized I was limping, my right knee buckling with each step I took. A few doctors’ visits and an MRI later, and I soon found myself being informed that I had multiple sclerosis.

Holy shit.

Welcome to the horrible.

As it turned out, my disease was of the progressive type, and aggressively progressive at that. Less than four years after my diagnosis I was forced to stop working, and about a year after that a wheelchair entered my life. If you had used my past as a predictor of how I'd react to this dreadful new reality, the projected outcome would not have been pretty. Had I been told before my diagnosis of what was about to come, and was then given the choice to either plunge forward or gracefully check out, I might very well have chosen the latter. But somehow, despite my forced migration from the miserable to the horrible, I not only survived but thrived, surprising not only myself but also those who knew me best.

Although MS (or whatever it is, as my diagnosis is more up in the air than ever) has imposed ever-increasing limits on my physical abilities, within those limits I've found a kind of freedom, one that was sorely missing when I was healthy and a so-called productive member of society. Looking back from the vantage point of the horrible, I can see that the life of the miserable is filled with an almost limitless number of options, so many that they can become paralyzing in and of themselves, as choosing one closes the door on so many others. The result can be a kind of blindness, a resignation to keep following a familiar but ultimately unsatisfying path.

Now that I am partially physically paralyzed, and my options limited in a very tangible way, I find in some ways that my existence is easier to navigate. Living within some very real boundaries in fact affords a certain amount of freedom, as the structure imposed by a debilitating illness invites one to use that structure as the skeleton upon which to build a new and different life. I have been freed from the expectations of the working world, a world in which we are often defined not so much by who we are but what we do. Apart from that world, I am free to define myself, albeit within the limits imposed by my disease, by what exists within. Thus, who I am, rather than what I am, takes on the utmost importance.

Just as a gifted poet limited to the strict rules of haiku can create combinations of words that have the power to take the breath away, attempting to live a meaningful life within the strict confines imposed by illness has allowed me the chance to rise above my previous foibles and weaknesses, to strive for some measure of triumph in the midst of mounting adversity, to try to be a better me. That effort has allowed me to rediscover parts of myself that had long ago withered from lack of attention, and to reconnect with the person I was before the burdens of adulthood and its attendant responsibilities had tugged and twisted that fresher version of myself almost beyond recognition.

Make no mistake, I am not saying that this damned and detested illness has conferred upon me any benefit that I could not have conferred upon myself while healthy, given a dose of mental strength and fortitude that I was lamentably unable to muster. This illness, any chronic illness, is a curse, a vile and venal monstrosity that is the very definition of horrible. But despite this beast attempting to consume me, I can endeavor to rise above, to mindfully claim each moment as my own, and to control my emotions rather than have them control me, thereby creating my own reality and snatching it from the gaping maw of illness.

Sick or healthy, miserable or horrible, we all have but brief lives to live. Those of us with the misfortune of being saddled with illness are only too aware of this fact, our mortality laid raw before our eyes as our illnesses insidiously do their dirty work. This keen knowledge of the frailty of existence can and should be used as a great motivator to make the most of each day, to live each and every moment to the best of your ability. This isn't to say that every sick person has to accomplish some kind of daily miracle; there are some days when the best of my ability amounts to lying in bed watching the Marx Brothers. It is often enough to acknowledge that time is fleeting, as my weakening left side constantly reminds me. While this knowledge can and does terrify, it can also fortify and strengthen the resolve to make damn sure that although illness may claim my body, it can never claim that spark of life that animates it and makes me, me.

The horrible and the miserable. Turns out we're all in the same boat. Might as well start rowing…

23 comments:

“They were not only brave but by god they could row”, from Pint and Dale’s ballad of two young Norwegians rowing across the Atlantic at the turn of the 20th century, stirred in my mind when I read your last sentence. Some days that’s all we can do is bend over the oars and pull in time to the universal healing clock. Thanks for writing such great posts; I began following you a few months ago and I am glad that I did.

Many are the options and opportunities which can only be seen in the rear view mirror. However, sometimes illness forces us to drive in reverse, and if we are very lucky, the mirror lets us see things otherwise missed... even if we clumsily hop the curb a few times getting there.

I've commented to many of my friends how much MS has made me conscious of the passage of time in a way I never was before. As we foster & adopt kids, I keep reminding myself to treasure the little burps and farts from them when I am up taking care of them knowing I will be tired the next day. What if the number of giggles and smiles for these kids is a finite number? Some of these kids may go home to neglect, poverty or abuse. Some will just live in a world entirely in their mind possibly never able to say "thank you" or "I love you." It's those times when I realize how much spending the time with them might be worth. My perception of time and opportunities has been forever altered by disease.

It's not soooo horrible. It's just playing the "living life" game with the difficultly meter set on hard. All the best hidden rewards are on this level.

So ironic, I was just saying something similar to someone on Monday. I am unemployed, even though I desperately want to work, I am on the verge of losing everything I worked for and was so proud of, including my beloved home and worst of all I am fat and cannot exercise enough to lose weight. Ok, maybe worst of all I am shallow and have terrible priorities. But on the other hand it is kind of nice to have my days to myself, to sew, to knit, and especially to write, all things I would not be doing, WAS not doing when I was still healthy and working full time.

I would switch back in a heart beat, don't get me wrong. I am not in the well-I'm-crippled-but-at-least-it-forced-me-to-stop-and-smell-the-roses camp. But it is a novelty to have some time to do things I enjoy after all those years of doing what I HAD to do.

You're right. It's not soooo horrible. And I have gotten to know you to boot. A true bonus. :)

A great post Marc. Some days the horrible isn't so horrible, somedays it's most horrible!But, as I said in one of my posts, "This is not the life I ordered, but it's the only one I have, so I'm going to have to go with it, and figure out how to make it fit."

I've always said that this is the hand we've been dealt and we can't play anyone else's. We can admire or even envy their cards but we won't win that way and I'm getting tired of constantly bluffing. But it's what I've been dealt and I'll soldier on.

I have to go now, Duane,because I'm due back on the planet Earth. Great movie...great lines...I shutter to remember even sporting the Annie Hall baggy menswear look for women. MS might be in Alvy's horrible category but I have met the greatest people that I would have never met....including you! Thank you for your posts..so enjoy reading them.

I'm part of the horrible club too. I was paralyzed from the neck down in a car accident 13 years ago. Thank God that most days I'm not miserable.Yeah, I agree, we are "all in the same boat. We had better start rowing..."The great thing about death is that it's not exclusive. Everyone gets an invite.A great post. Thank you.I recommended your blog to a family I know just recently. Their 14-year-old daughter has just been diagnosed with MS. So sad.Keep on doing what you're doing man, you are an inspiration to many.Sending you warm wishes from across the ocean, South Africa.

MS..It is what it is. We lived through our daughter's cancer diagnosis when she was a pre-teen, so we've been down this road before, although it's not a route I would have chosen. We've learned to go with it & improvise as we go. I never dreampt of this but it does give you a whole different sense of being, of smelling the coffe so to speak and how to appreciate the little things in life. As usual Marc, a great post. Keep rowing! KIM

Either I am channeling you or you are channeling me. "within those limits I've found a kind of freedom" Amen, brother. I do not believe God strikes us with disease and illness, but boy, does He use the tools at His disposal to shape us!As usual, a superb piece of writing!

Marc, I find this greatly profound. I hope a bring a slither of this level of writing to my audience. I forwarded this to all I thought didn't "get" me! I'll let you know how it worked out for me!Nicole

Rowing away beside you, pushing back those alligators who want to chew on my bones with a paddle.There are blessings to this disease, as there are to any horrible disease, in that it makes you pause and look at the life you are leading and choose a new path, limited though it may be.Still looking at easy walking people with envy - do they KNOW how lucky they are? Do they sense the beauty in that simple movement? I wish they would.

Lynda-thanks for that terrific quote, now I'll have to Google it so I can read the entire ballad. I also love your reference to the "universal healing clock". A lovely and positive image. May peace abound around you, too…

Life-what an insightful and touching comment. The fact is, the number of giggles and smiles for everyone is finite, a notion that some shy away from, but that really should be embraced. Like taking tiny bites from the delicious dessert in order to make it last longer, we should savor our days and those who bring light to them. I wouldn't mind, though, if the difficulty meter on the living life game was ratcheted down to "medium" every now and again. I suppose that's in our own power also, as we spin our own realities…

Marie-thank you for your lovely comment, but most of all thank you for encouraging me to start blogging all those years ago. I really didn't know what a blog was when you first suggested it. Indeed, the problem with working full time is the "full time" part. Whoever came up with the five days for them, two days for me scheme needs a vicious spanking. Of course, they say that if you do what you love then you never really work, but somehow I could never figure out how to make money watching Godzilla movies in my underwear. Dammit. At least now we have time to stop and smell the roses, as long as I haven't accidentally backed over them in my wheelchair…

Karen-very few get the life they ordered, there's an old Jewish proverb that says "man plans, God laughs". It's very true that once you are a member of the horrible, you realize that there are definitely different levels of horrible to be experienced. During the horrible horrible times, you just have to get through, and then take full advantage when things return to being merely horrible.

Judy-as always, a few words carefully chosen that are as light as a feather and heavy as an anvil. Thank you for your contributions…

hadjinmoll-as a poker player, I'm definitely down with the cardplaying metaphor. Good poker players know that the cards you're dealt are not nearly as important as how you play them. While it's always nice to get dealt a full house, more often than not you're left looking at "rags", and it's up to you to use wit and guile to make something positive out of what amounts to a handful of nothing. Hard lessons to learn, but the important ones usually are…

Karen-I've always loved that scene in Annie Hall with Christopher Walken, of course followed by the scene of Duane giving Annie and Alvy a ride to the airport. Great stuff. It is true that I've met some of truly wonderful people in the land of the horrible. If we could all make the transition back to miserable, we'd for sure throw a party for the ages…

Tracy-so sorry to hear of your accident, but you seem to have things in perspective. We try to look for patterns or reasons, but if there are any they are far beyond our comprehension, so it all might as well just be one giant crapshoot. I hope my blog can give some comfort to your friends, and I send out well wishes to their young daughter (and of course, to you). Thanks for saying hello all the way from South Africa…

Kim-no, this is definitely not a route any of us would have chosen, but the offramp is awfully hard to find. I hope your daughter is doing well, and as you say, improvisation is the key to getting by. John Coltrane and Miles Davis did pretty well with improvisation, so perhaps being forced into that role does confer some kind of benefit. Wisdom, perhaps? If not wisdom, then at least an understanding of how tiny we are in the face of the universe…

Me-thanks for your lovely comment. If we are channeling each other, do me a favor and channel over a nice lobster tail stuffed with crab meat. I'm hungry. I promise, I'll return the favor…

Nicole-please do let me know how things work out. As for being able to deliver meaningful content to your audience, just be honest and write from the heart. That's what jumps off the screen…

Dabble-boy, I do share that "easy walking" envy with you sometimes. It's nothing I dwell on, but it can strike hard. Unfortunately, most of the healthy don't realize how lucky they are. I do remember, when I was one of the easy walking people, thinking about how wondrous our ability to be bipedal is. So many moving parts and balancing acts involved in taking just a few steps. At times I almost feel like stopping people and reminding them just how lucky they are, but here in NYC that could get me slapped in the head with an iPhone. It's especially frustrating to see so many dour looking people strolling along without a hitch in their step. Whatever is causing their consternation, I'd 99 times out of 100 gladly trade places with them, especially if I could retain some of the lessons learned in the world of the horrible…

"that's ok, we can walk to the curb from here."marc, and other commenters, i admire and honor your ability to see the silver lining, however fleeting. i have only been wheeling for about a year (stumbling for 10) as this disease nibbles the swiss cheese of my brain, and do not know how to rediscover the miserable. the idea of the rest of my life spent waist-high in the world is about as horrible as i can imagine. my wife says, "i'm going for a walk," which every morning stings as i look out the window at the forest that used to be my sanctuary, that i will never get back to, and my heart breaks. sorry to be the downer at the party, but i don't remember how to be anything else. thanks for sharing the thought that it is possible.

{{hugs}} I would so love to take some credit for you starting to write Wheelchair Kamikaze! Thank you for the acknowledgement. But this stuff was in there and was going to come out one way or another, regardless of any encouragement from me. You were born to be a writer.

Of course, you may have also been born to watch Godzilla movies in your underwear too. Call me crazy, but I am glad you took the other fork in the road.

As, a former journalist and writer, I remain incredibly jealous at your eloquence. You can write brother and seem to be reading my mind. It seems you are about two years ahead of me on the downward curve. About a year ago I started to accept walking with a cane and just recently purchased a Luggie scooter to help me traverse long distance. It is funny - and I guess sad - how much of a leap it takes for me to embrace that next step down off the mobility precipice. Only recently have I begun to get present to the ticking time bomb that is pulling at my ability to be self sufficient. I have a 16 year old daughter and I fund myself marking my need to continue to work as a lawyer against the anticipated expenses she will need for college and the like. Truth be told, I am not so sure I will win that race. I have always held my situation in the following context, everybody has their shit mine just chose to manifest itself physically. But for the MS, my life has been pretty extraordinary and I’ve been blessed. I always loved chaos and in a weird way I look at the disease as my soul’s way of gifting me the ultimate chaos. It is like playing a continual game of chess. No matter how I manage to adapt and navigate around the disease my body puts me back in check. Even the government seems to be pulling against me. Since I can’t play basketball anymore the competitive side of me found comfort in playing on-line poker, now the feds have shut down all the good sites. I too never could have imagines life with such a physically compromising condition and have refused to let it constrain me, last year I went to India with friends who appreciated the joys of zipping through airport security with a wheelchair bound passenger (that and my handicap parking pass are two benefits that can not be understated) and this year I finally got my wife to agree to travel with me to Napa. I had my little fold up scooter that I could drive through the airport and gate check. It fits in the trunk of a car and has given me considerable freedom to go to museums and meander in New York. This Saturday I am taking it to Giants Stadium for the Giant/jet game. I have some trepidation of how well it will work because the stadium requires me to navigate stairs to get to my seats but I am up for the challenge. Bottom line is MS has forced me to do the one thing I was never very good at …… accept help from others . Now I am forever aware and in gratitude for the kindness of strangers. The Universe has some sense of humor.

b/t/w Did you ever see the Diving Bell and the Butterfly? The movie was a real kick in the head for me and induced my first really good cry over my condition.Hang in there. With great gratitude.

Wonlife-that's always been one of my favorite quotes from the movie, I can't tell you how many times I've actually used it when a friend has parked too far from the curb. Believe me, in addition to seeing the silver lining, I can also see the dark at the end of the tunnel, and I have my share of "moments". It's an ongoing exercise to train your brain to keep from going into the gloomy places, but as with any exercise, it does get easier over time. There's no denying that our situation sucks, but the fact is that it may suck even harder in the future. Though that knowledge can be and often is terrifying and depressing, it can also be used as ammunition for determining to make the most that you possibly can of today. As I've written before, contentment isn't just a choice, it's 1 million choices made almost every moment of the day. You won't get another shot at today, and as aware as we are that time is fleeting, it's almost illogical to choose to nurture the heartbreak. Although it often doesn't feel like it, our emotions are products of us, and not we of them, and thus they can be mastered. Hang in there…

Marie-perhaps I should have tried writing about watching Godzilla movies in my underpants, maybe then the universe wouldn't have decided to give me something else to chronicle. Dammit. Thanks for your overly generous words…

Howard-thank you too for your praise, I'm just happy that my words can be of some comfort and inspiration. I'm right there with you about the federal government shutting down Internet poker sites. WTF? For a while I was absolutely addicted to the online games, even managed to buy myself a fairly expensive camera with my winnings. Seems to me there are bigger problems for our elected officials to worry about.

Anyway, enough about that. It is certainly difficult accepting each new mobility aid as it becomes a necessary part of our lives. You've always got to keep in mind that the brace, cane, or scooter does not define you, but rather you it. You're not a guy in a scooter, you're a guy, in a scooter.

I'm often torn between thinking that there is some kind of reason to my predicament, with lessons to be learned, or if I'm just a victim of a completely random and chaotic universe. Modern physics tells us that we live in a universe of at least nine dimensions, of which we can only perceive three, so there's literally more to our circumstances than meets the eye, or ear, or touch. Our puny little three-dimensional brains are simply ill-equipped to make sense of any of it, and yet we are driven to try to understand. As you note, we are continually caught in a game of cosmic chess, with a distinct disadvantage of being completely unable to understand all the rules. This can of course be maddeningly frustrating, but once you accept your relative insignificance, it can actually become a source of a kind of serenity. The ultimate message may be that we shouldn't take ourselves all that seriously, we are but specks in the grand scheme of things.

I hope you had a good time at the Giants/Jets game. Eli looked terrible, hopefully were not in for another two interceptions per game season…

"There's no denying that our situation sucks, but the fact is that it may suck even harder in the future. Though that knowledge can be and often is terrifying and depressing, it can also be used as ammunition for determining to make the most that you possibly can of today."Dude. Printing out your comment so I can look at it often. Of all the words of encouragement, your comment is the best I've seen. And I've read all the self-help crappola. It's a combination of Humanistic-Existential and Cognitive-Behavioral not learned by any schooling except the one of hard knocks. Your "torn thinking" is one I've echoed often in my own mind.

the Game sucked but it was a nice respite from my electricity free home, three days without electric. fortunately they let me recharge the scooter at the stadium. Fortunately the Giants defense looks good. Just think we could have had Phillip Rivers.

Not sure if you amenable to this conversation but I have been reading the Chaz Bono firestorm that came out of the announcement that "he" will be competing on Dancing with the Stars. The transgender thing seems to be a trigger for me that I might have ignored in the past. It is hard for me to embrace the "I am a man trapped in a womans body" cry that is being used to justify a lot of money, time and resources being expended to change the physical package someone was born into. Maybe I should be more empathetic but I seem to be unusually perturbed by this one. Afterall I was a very physically active extremist born into a body that didn't plan on sustaining that activity long time. Wouldn't it be nice to trade in flesh and bones for titanium legs?

Howard-the thought that we could have had Philip Rivers crosses my mind multiple times a game. I was never sold on Eli, and wondered why management was so gung ho on getting him in the first place, aside from his marketable last name. There are at least 10 quarterbacks in the league I'd rather have behind center.

As for the transgender thing, my attitude is live and let live. Our situation definitely sucks hard, and the idea of winding up as a brain imprisoned in a penitentiary of useless bones and flesh is revolting (and, frankly, unacceptable), but I can't cast judgment on those who feel they're trapped in a body of the wrong gender. Certainly, they must be feeling quite anguished to be willing to undergo the radical surgery and hormone therapies involved in making the switch. Basically, my attitude is that however somebody finds their happiness is fine with me, as long as their happiness doesn't encroach on anybody else's. I have enough trouble trying to figure out how to use Facebook, let alone unravel the rights and wrongs of complex moral issues that don't really impact anybody but the individual wrestling with them. My real question is why anybody would want to be on "Dancing with the Stars", but that's a whole other can of worms…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...